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Wednesday, October 24, 2007

A Captive Audience

Oddly enough, when I talk, people actually listen to me. Well, unless I'm at the dinner table with my family! Today, I addressed a group of pulmonary nurses at Children's Hospital of Philadelphia (CHOP). Drawing upon my experiences as both a teenager and an adult, I talked about what it's like for someone like me to be hospitalized.

For example, at home, my environment has been adapted to my needs. In the hospital, there's not much that I can do for myself. I can't change the channel on the TV. I can't read anything because I can't hold a book or turn its pages. I can't feed myself. I feel bad asking the nurses for help with these things because I'm not their only patient and they have more important things to do than to find me something interesting to watch on TV.

Help using the bathroom isn't something I have a problem asking for, but there's nothing like having a full bladder and you have to wait for the nurse to arrive. As a result, I would drink as little as possible. However, eight hours later, they would want to catherize me because I had not urinated!

Even calling the nurse is an issue because I cannot physically push the nurse call button. At CHOP, they now have sip-and-puff devices that allow you to trigger the nurse call systems with your breath, so that does help -- unless, of course, the device slips out of the range of your mouth.

One of the nurses brought up the issue of positioning. For many of us, it can take a lot of time to get comfortable in bed. I know that I often need my head moved several times. The pillows supporting my legs need to be placed in exact position. It can be very frustrating for caregivers.

"But trust me," I told them, "We find it just as frustrating as you do!"

On the subject of positioning, I also talked about the fear that people like I have of being moved by nurses because many of us have contracted arms and legs. It's not just that my legs are locked in place; it hurts when they are moved too much. One wrong move and I could be injured.

But I think that the biggest message that I tried to get across was that when you are in the hospital, you tend to act differently than you would at home. I explained how I became a lot more emotional when I was in the hospital for two months. Things that ordinarily would not have bothered me did just that. I only wished the nurses and doctors could have known me outside of the hospital because they would have liked me!

During that hospitalization, I was an adult. So if it was bad for me then, just imagine what it's like for a child. One of my most vivid memories from my hospitalization at age 15, following spinal fusion surgery (other than being in pain), was one of the nurses wanting to give me a bath. I felt awful and the last thing I wanted to do was get washed. All I wanted was to be left alone and I was less than pleasant to deal with. At that moment, whether I smelled badly was hardly the first thing on my mind.

Not a fun experience, to say the least. Let's just say that I was much more pleasant today -- and I smelled a whole lot better, too!


Kimi said...

I'm glad the nurses were perceptive to your experiences as a patient. It's ironic, but in the hospital I think I become less of an advocate for myself b/c I know the nurse has other patients than me. The hospital is the one place you NEED to advocate for yourself. I think I say the words "it's ok" more than any others in response to apologies for ignoring me most of the day. The only time I get upset is when I've asked for pain medicine once and the nurse hasn't returned w/it after 30 mins or more. I know pain isn't always life threatening, but it's definitely not pleasant! But IMO, I still complain about this to the them nicely.

Lori said...

Hi Josh,
It is so good of you to educate nurses on the special needs of hospital patients with DMD and other disabilities. When my brother was in the hospital at Hahnemann last summer, we had some really great nurses, but also had some trouble with certain nurses. My mom, my dad and/or myself were with Jeremy 24-7 during his hospitalization because we were really afraid that a nurse or doctor would not understand his unique needs. This was especially the case after he got the trach and couldn't speak. The most trying times of the hospital stay were shift-changes because you never knew who was going to be assigned to Jeremy. A few of the nurses got annoyed with us for trying to explain how to move Jeremy's arms and legs properly. This occurred mostly in the ICU. Some nurses thought we were "interfering" with their job. On one occasion, a nurse threatened to call security to have my parents removed from the room! That was a very scary and awful time for my brother because he was truly terrified of being in the room by himself. The nurses were used to moving people who were unconscious, but not used to moving someone around with DMD. It is completely different. I am not faulting them for not knowing how to specifically care for Jeremy. Only my mom and dad and a few of his regular caregivers could have that knowledge based on years of experience. I fault them for not admitting to themselves that we knew better, for not listening to us and OF COURSE, for trying to kick us out!

Anyway, thank you for speaking to the doctors and nurses. Hopefully, as a result of your talk, more people with special needs will have better experiences at the hospital. You are doing a great service for the nurses and doctors you lectured...and obviously a great service to patients everywhere.

Josh Winheld said...

Hi Kimi,

Thanks for your comments. I agree wholeheartedly with you. It's especially important for patients with disabilities like ours to advocate for ourselves, as we are so limited physically and need help with even the most basic things.

Josh Winheld said...

Hi Lori,

Welcome to Winheld's World and thank you for your insightful comments. I can certainly relate to your brother's fears of being left alone in the room. I think it's awful that a nurse would threaten to have you removed from his room.

I don't understand why some nurses cannot handle being shown how to do something by patients/families. We're not trying to step on anyone's toes, so to speak. All we want to do is to make sure we get the best care possible.

Thanks again for your comments, and please keep reading.